The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Chia vs Enlander vs de meirleir?

Discussion in 'General Treatment' started by alice111, Aug 5, 2015.

  1. alice111

    alice111 Senior Member

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    Hi guys!

    wondering who has seen any of these three doctors?

    have you heard reports from other patients re these doctors?

    what are the pros and cons?

    how do they differ?


    still waiting on cost re de meirleir but chia and enlander are the same. I am too ill to travel, so I would work with one of these three via skype.

    I have yet to do thorough viral testing, and have never tried antivirals so this is my main goal.

    any advice or feedback would be great! thanks :)
     
  2. minkeygirl

    minkeygirl But I Look So Good.

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    I'm not sure but don't most U.S. docs need to see you in the office once a year?

    Can you get your pcp to test for viruses?. That would save you if they came back negative.
     
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  3. Sushi

    Sushi Senior Member Albuquerque

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    De Meirleir would require a face to face office visit before beginning treatment.
     
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  4. halcyon

    halcyon Senior Member

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    I believe Dr. Chia requires in person appointments as well, at least to establish care.
     
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  5. alice111

    alice111 Senior Member

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    The 3 I have mentioned have all agreed that it's ok to forgo the in person visit as I am too ill to travel. As long as I do the quid testing they are willing to work with my local doctor.
     
  6. alice111

    alice111 Senior Member

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    ** oops required testing
     
  7. alice111

    alice111 Senior Member

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    From what I understand most test require someone to interpret right? Like they don't just say positive negative, it can be a titre, and different doctors will think different number are important.. Is this true? Maybe I am wrong about that..
     
  8. minkeygirl

    minkeygirl But I Look So Good.

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    I think differnt countries have differnt ways to measure stuff. I know in Australia some labs just say high or low but not an actual number. Where are you?

    And yes. Mainstream docs will like at viral numbers for example and say "these are fine, everyone had been exposed to this virus" but s doc who gets ME will look at them and go "you have a problem". That's the problem many of us run into. I do.

    I'm positive for cmv IgM. The infectious disease doc I saw said he wanted to run CMV by PCR. Herpes viruses rarely show up in the blood and when mine was normal he wouldn't rx Valcyte although he is monitoring me while I'm on it

    I don't think in you're original post you said you had a doc at home to supervise. I'm sure that makes a difference to the docs.
     
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  9. perrier

    perrier Senior Member

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    My daughter saw DeMeirleir. A huge waste of time and money. Twice we went over there. Stayed two months the second time. He takes tons of blood. It made her very sick. And then nothing.a few little supplements. Then lots of phone calls. Then he said to come over and stay a year. We said fine. Then my daughter called him, to say she was coming, and he says, but I'm not going to be here. And he never said when he would be there, or when she should come. He also sort of took up Lyme too, and started learning this also. He has helped his daughter,however. And this means that if a doctor is ever present and dedicated to a patient, he can help. But we are not all his daughters. He has been a great disappointment in my life. Perhaps he has favourites, who knows?
     
  10. Sushi

    Sushi Senior Member Albuquerque

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    No, we are not all his daughter and his methods and the treatments he offers change as research develops. I think that like most of the ME/CFS docs, he helps some and not others. I am his patient, he has helped me a lot, but it has taken time as he worked on different "layers" of my illness.
     
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  11. perrier

    perrier Senior Member

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    I'm very deeply happy for you Sushi. But he never even began to help my daughter,never even tried.
     
  12. perrier

    perrier Senior Member

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    I should add that KDM himself articulated how very sick my daughter is. She is housebound entirely,and mostly bed bound. So a trip from North America was a huge thing. Furthermore, he said he would get in touch with a local doctor in the city I live,but did he do any of these things? No. I know he's busy. But he shouldn't offer thins and propose things and not go through. It was so devastating for my daughter when she called him to say we were coming for a year AFTER he proposed it,only to have him tell her he wasn't around! My daughter had an adrenal collapse from the call.

    He saw a difficult case and perhaps didn't want it. I don't know. I just don't know.

    But this is not professional conduct.

    Furthermore,I know others who have also been neglected. Others get favourable treatment.
     
  13. Sushi

    Sushi Senior Member Albuquerque

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    He is actually very interested in trying to help with difficult cases but realizes that they need to be close to the clinic for it to work--hence proposing that your daughter come there. At the time he probably didn't realize how "stretched" he was going to be with travel and treating patients in four countries.

    He actually set up a program in one country of doing home visits for very sick patients--in coordination with their doctors. But the problem of being available when needed will always be there for such a "stretched" doctor.

    I think he makes promises like this be cause he thinks he will be able to fulfill them, but then finds he can't because he has too many patients. And he has too many patients because, with ME/CFS in his family, he never likes to turn new patients away. I'm sorry that this didn't work for your daughter.
     
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  14. perrier

    perrier Senior Member

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    Dear Sushi, it didn't work because he didn't make it work. We did what he said to the letter. My daughters situation, like that of so many others is tragic. And it leads folks to suicide. And when physicians whom they trust and need shrug them off, it's dangerous.
    But we can go on. I'm delighted he helped you and others.
     
  15. Nielk

    Nielk

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    Unfortunately, no doctor can help every patient.

    I'm a patient of Dr Enlander. I think very highly of him
     
  16. worldbackwards

    worldbackwards A unique snowflake

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    Everytime I see the title of this thread, I think that they should have a big pant-wrestle to see who's top dog.
     
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